12/30/14

It's been awhile.

This used to be my baby. My obsession.

Things change. Sick kids happen. Kids heading towards transplant. Kids with incurable pain disorders. With it comes so much that it's impossible to name. The most painful is the loss of friends and family.

I've decided that in 2015, I can no longer focus on that. There will be no more forcing my way into situations that never work anyhow. No more carrying grudges, no more hoping that someone will give a flying fart.

My boy was told that if things don't change, he will "loose his liver" in 5-10 years. He's 18, going on that timeline, even at the max of 10 years, he will only be 28. When I was 28, I had already been married 7 years, he was a year old. I had a life. I was able to be a semi normal teenager. He's facing death unless some miracle happens where we can keep him completely compliant, I can get a job and take care of some of these bills, and get him listed. Even then, he can only get a liver from someone either O+ or O-. And that timeline can be sped up when/if they agree to do the gastric bypass. The very surgery that may save his liver, can also destroy it. We already did the research, before he agreed to it.

The family that have avoided us or walked out of our lives, can stay there. We're ok without them. I'm not going to cry over it anymore. I have bigger worries. They've already proven that they want nothing to do with us, and we are surviving without them. If my son dies of this, I will not notify any of them. I want no crocodile tears. If he beats this, they will not be involved in any celebration. They've proven that they don't care. And, yeah, it hurts, but we are surviving. There will be lots of people not notified about anything more concerning Jamey.

In the new year, I want to start a series of posts especially for the plight of medical parents. The isolation is horrific and something you will never truly understand unless you live it. It is actually worse when they can't figure out what is actually wrong with your kid. We still only have partial answers. It's been almost 3 years.

I'm starting to research a bit into the transplant process and I have a lot of work to do. 2015 will be all about either saving his liver or saving his life. Thankfully, I can do both at the same time. I also have to make sure Edward is allowed to be a normal teenager. And thats going to take some juggling, especially since, next year he's JV/Varsity. Back to two games a week for 9 weeks plus all the practices and fundraisers and meetings and weightlifting. It's extremely important that he doesn't loose himself into Jamey's conditions. And its just as important that we keep him from developing the same.

Some hard questions that I doubt I'll ever have answers to: How can an 18 year old have such an advanced form of a disease that usually hits people in mid life? Could we have caught it earlier if we had a pediatrician that wasn't afraid of labeling people? Does he really have CRPS or was he given that diagnosis because they don't know nor care about finding the real reason behind his pain? Why does surgery insist that pain is the reason they removed his gall bladder when it was only working at 12% and duplicated? And the big one, why did 2 doctors agree with us that there was gauze coming from my sons incisions yet surgery insist that it wasn't? If it wasn't, then what was it and why are they so afraid of doing an exploratory?

I have to run for now, but I have big plans coming up and will be back.

0 Comments:

@TerrorMom

My photo

I guess I'm actually supposed to fill this out. I'm a passionate medical mom of a 19 year old liver/CRPS patient. My goal with my blog is to raise awareness for his conditions. And to hash out my feelings about it. There are a lot of raw emotions when your life is suddenly stalled by any illness, let alone your child's illness. 

I'm also attempting to either "find myself" or "remake myself". So much of my time and energy goes into caring for both my mother (end stage COPD) and son, along with trying to be Mom to my younger son and a wife, that most of the time I feel lost. I tend to put myself on a back burner and right now I'm burning out. 
 

At Home With TerrorMom Template by Ipietoon Cute Blog Design and Bukit Gambang